Last Thursday I went to my volunteer job at the hospital, but I never made it home.
Two months ago I had a surgery to remove a 7 year old central line catheter from the right side of my chest that had gotten clotted. Shortly thereafter I had a second surgery to have a new one put in on the left side. They were miserable surgeries because the hospital no longer uses anesthesia for these procedures. I’ve had 4 catheters put in since 2005, and I’ve always been put to sleep for the surgery, so when I learned, on the operating table, that I would be awake, I panicked. What made it really scary was that they covered my face with a heavy, sterile blanket, and I was sure I’d suffocate. I wanted to jump off the table and run screaming from the room, but I needed a catheter for my monthly IVIG infusions, so I resisted the urge. The old catheter was removed and I bravely returned to have the new one put in.
This past Wednesday, as I was changing the bandage on my new catheter, I noticed it was a little red. I cocked my head and squinted my eyes, hoping that would make it look less red. It didn’t work. Should I be worried? Nah. I pulled the neck of my shirt down one more time before leaving the bathroom and looked again. Was is remarkably red? Nah, you’re just overreacting, I assured myself.
When my home health nurse came the next day, I showed her the redness, convinced she would say it looked fine and I could go about my business. It couldn’t possibly be infected. If it were, I’d have a fever and feel crappy. In 2010 I got sepsis from a catheter and I remember how terribly sick I was, and all I was feeling now was some dizziness and nausea.
I peeled off the bandage to show my nurse. “Oh, that’s red. Keep an eye on it,” she warned. Her concern surprised and disappointed me. I wanted her to tell me it looked fine. Darn it. Now I was worried. But I had to get to my volunteer job at the hospital so I tucked my worry away for a few hours.
As I finished my shift, my worry returned. Why don’t I just ask a doctor since I’m here at the hospital? I went to the ER, hoping a doctor would take one look and say my catheter looked fine, but that’s not what happened. The doctor looked, then told the nurse to start an IV on me for antibiotics. What? Wait, if I have an IV, I can’t go home.
“Please change into this hospital gown so we can get your IV started.” The nurse ordered. I very reluctantly took off my volunteer uniform and put on the gown.
The doctor came back in and took a phone photo of my red catheter and sent it to the infectious disease doctor. He texted right back, recommending a broad spectrum antibiotic.
“How long will I need this?” I asked, feeling trapped.
“Until the infection is gone.” The doctor said, as though I should understand the gravity of the situation.
“Will it be possible for me to get these infusions at home with a visiting nurse?” I wanted to go home.
“Not until we see that the infection is subsiding,” she explained. How long would that take? Hours? Days? Weeks? When I had sepsis I was on IV antibiotics for six weeks!
Just an hour earlier I was on my way home and now I was hospitalized. I wanted to just get up and leave before the nurse set the IV, but I sat there, stared at the curtain directly in front of me and took some deep breaths. Just stay. I told myself. This was not how I planned to spend the afternoon, but I was here for a reason. Being in the hospital won’t be all bad.
A few hours later I was wheeled to a room on the seventh floor. I was pleased to see it was a private room. I’m sure my crummy immune system bought me that luxury. Except for all the tubes running into my arms, which restricted my mobility, I was okay. The nurses noticed my volunteer uniform draped over the chair next to bed and treated me like a member of their family, so I felt a little like I was home.
The next day a doctor came into my room and explained that an infection in or around a central line catheter can become life-threatening within 24-48 hours, and that I was lucky it was caught this early. He said I would receive IV antibiotic until all the results came in from the blood cultures taken in the ER. I still had no idea how long my stay was going to be.
Being abruptly removed from my normal routine was hard for me. In the past few years I’ve lost my ability to adapt to changes in routine. This change initially filled me with fear and panic, but I was able to calm myself by writing, talking to friends and family, and pretending I was in a hotel at a spa-resort. My ability to play “make-believe” is pretty good, probably because I’ve never really grown up. In the last four days I’ve felt moments of acceptance and peace. Is this God’s way of showing me I’m not as inflexible as I fear?
Hopefully the doctor will decide that I can go home today. I will have to continue the IV antibiotics at home for a while, but I don’t mind. Giving up my freedom and quieting my panic about being trapped for the past four days suddenly seems like a small price to pay to keep this infection from killing me. Once again I get this feeling that someone upstairs is looking out for me.